Jaxson’s Journey

Where to start... I am very joyful, excited, happy, sad, confused, scared out of my mind, concerned and overwhelmed. My 5 year old grandson who was born with Cerebral Palsy has just been approved for selective dorsal rhizotomy (SDR) surgery. Everything is moving so fast. His appointment with world renowned surgeon Dr. Park in St. Louis was on September 26th. The surgeon said that if Jaxson doesn't have the surgery he will be in a wheelchair for his entire life and he could almost guarantee it. Apparently, his muscles will deteriorate because of his extreme spasticity. So, it was a no-brainer for my daughter and her husband to move forward with the surgery. The Dr. scheduled it for November 4th-this year!

This will or rather can be life changing for my grandson and our family. Though Dr. Park does not feel that Jaxson will ever walk independently outside, he does feel that he may be able to walk with arm crutches and that will be amazing!! He will gain some independence and be able to sit upright and do many of the things he enjoys like playing Mario Kart 8 on his Nintendo Wii. With less spasticity he may be able to write better and eat better with a folk. Some of the things that we take for granted that come so easily to us are great efforts for Jaxson. He is the light of my life and I will do whatever I can to help make his life more enjoyable and easy.

After the surgery is when the real work for Jaxson will begin. He will have to re learn to move his body and muscles. Our entire family has to help out as there is too much to do and it is can be overwhelming. We are trying to work out our schedules and move things around so that he can be the center of our focus since he will need support from each and every one of us. Jaxson does not fully understand what the Dr's are going to do for/or to him, nor does he have any idea of the enormity of work and pain that is ahead. It breaks my heart to think about it.

This year he was mainstreamed into Kindergarten as he is a very bright young boy. He is eager to learn and he is inquisitive! During his many months of post-op therapies he will have to miss months of school and homeschooling is something that we are looking into. Right now he is very popular at school, the other kids love him and fight over who is going to sit next to Jaxson in the lunchroom. I hope that he doesn't have to miss too much or get behind. The socialization that he has had in school has been wonderful. He wakes up every morning excited to see his friends and teachers.

So, even with all of the struggles ahead and the fear my family and I have, the one thing that we hold on to is hope...

First of all, thank you all for your very kind well wishes for Jaxson. Please know that while I would like to answer each and every email separately and explain everything I just can't- it has become overwhelming--in a good way :) . Each time I read a comment or answer an email it makes my heart happy that so many of you care so I wanted to give everyone an update.

Jaxson's surgery went very well. Dr. Park said that his spasticity should subside considerably, it has, however the physical therapy needed to strengthen his now limp legs is ongoing and extensive. He works daily to strengthen his core, his limbs and his soul! He is a trooper; he has worked through a lot of pain but most of it is going away. He will be in a NJ rehab facility until Dec. 10th and my family and I will take turns staying with him around the clock. They think that he may start having spasms and severe pain in his back-apparently it is common but right now it only hurts a bit. The scar on his back is healing nicely; it is large and quite raised, I have been told that that too is normal.

During Jaxson's physical therapy he has been walking on his walker-he is up to 150 steps! In addition to physical therapy he has occupational therapy, recreational therapy, speech therapy and is scheduled to begin swim therapy next week. He also has an hour of school each day though I don't think that that is enough so we continue to "play school" together, he just loves it! I pretend that I am his school teacher and all of his stuffed animals are his classmates. He of course is the smartest one in the class and I tell him that over and over again :) Through all of this Jaxson has not lost his smile and for that I feel truly blessed. Our hope as a family is that one day Jaxson will be able to walk and gain some independence BUT mostly it is that he has a happy and healthy life.

Thank you all so much for your kindness and support,
Hugs,
Denise

Well, we had hoped that Jaxson was not going to need a second surgery however, after sending video tapes and measurements to Dr. Park, he has decided that the heel cord surgery will benefit Jaxson. I am again, worried sick but I know that he will be in good hands and I have complete faith in Dr. Park's abilities. I also want every effort to be made to help Jaxson have a brighter future.

A special heartfelt thank you to everyone that has commented and shown their support. Our local PBA has even gotten involved. I can't tell you how nice it is to see our local community as well as people from around the world reaching out to help Jaxson. Anytime that I get afraid or worried or even down in the dumps, I remember how lucky we are and I remember the sign below that my daughter shared with me after her first visit to St. Louis Children's Hospital.

This was a sign that my daughter saw when she first walked through the doors at the St. Louis Children's Hospital, I love it! It is so inspirational and I keep it tucked away in my heart. Below are my two sunshines. Jaxson and Tanner. My daughter captured this image of the two boys when Jaxson was in rehab, she used her iphone.

We hope to bring awareness to other families that have no idea that this surgery is available and that some insurance policies cover the surgery. We had to find this information out on our own, not one doctor or therapist along the way even mentioned it to us. This is not a cure for CP, but it makes a great difference in the quality of the lives of those who have had the procedure.
Fingers crossed, wish us luck!
Hugs, denise

It has been about a month and a half since Jaxson's 2nd surgery. After having the second surgery Jaxson drags his right foot and it is slightly positioned outward when he walks. I didn't notice him doing that as much before the second surgery. The doctors and therapists say it is because his muscles are so weak. I remain hopeful. He has had two major surgeries back-to back and he is a small child so I do need to take all of that into consideration. Still, deep in my heart, I want so bad for him to walk around like all the other kids. I know that I need to be patient and that he needs to recover and re-gain strength in his legs.

Jaxson continues with therapy almost every single day, including swim therapy. In addition to his regular therapy sessions at Children's Specialized 3x a week he has a therapist that comes to the house twice a week. In school he has additional physical therapies 3x a week and speech therapy once a week. He is gaining strength and working hard daily. Sometimes, I fear he is working too hard and he does not have any time to be a kid. My daughter set up his first play date after school-I'm so excited for him. Jaxson is very shy, I think in part because of his CP (Cerebral Palsy). He is also falling behind in school, because of his physical needs, loss of school during the surgeries, etc.. AND we found out he was having trouble seeing, on February 8th he was fitted for glasses.

I do want to add that my family and I feel extremely blessed. Sometimes when things seem bad we remember some of the other children that we have met along the way and we count our blessings. Jaxson is a sweet, lovable, happy, well adjusted, 6 year old with love and happiness in his heart. He makes us all so proud everyday. We love him to pieces and he knows it.

After his first surgery and rehabilitation time Jaxson came home-my daughter wrote this below.
So happy to have his brother home finally!! It's been a very challenging 5 weeks for us ALL but we made it and are stronger as a family for it. Jaxson you are my hero.....a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles ~ Christopher Reeve. Some people never meet their heroes I gave birth to mine. Minutes after being home Jaxson climbed the stairs in our house to his room...I honestly didn't think that he would be able to do that his first day home but all of his hard work and strength has really paid off!!!! So proud!

Younger brother Tanner is happy to have Jaxson home again.

Jaxson wears night braces, my daughter wrote this below:
Every night he wears two different braces to bed, they are for his hamstrings and heel cords to get the best and longest stretches. The time it takes to get them on and the Velcro that seems to always be stuck to one another is enough to make someone crazy....but not him he keeps smiling and is so proud of himself for wearing them all night long! He literally is rolling off his bed in the middle of the night because he is trying to either lay on his side or belly...the braces won't let him move his bottom half so you can imagine how difficult it is to wear these. He will wear these for at least 9 more months.

After his 2nd surgery my daughter wrote this:
Out of surgery and recovery and getting settled into his room! Surgeon said the surgery was a success and that his muscles were easily corrected. He believes this will be the icing on the cake for Jaxson and help him even more with his balance and coordination. He also said that Jax will now have a heel to toe with straight leg walking gait like all of us. We are so excited for his future and to see how all his hard work and suffering will pay off! Thank you all for your continued support and love, it has truly helped us through some of the hardest times.

The other night Jaxson and Tanner had their first sleep-over together. They had layers of bed covers on the floor with blankets, pillows and bedtime stories- told by yours truly. They share a room but have never slept on the same bed so having all the blankets on the floor was a fun treat for them both. Throughout all of this Jaxson has a surprisingly great outlook on everything. He is always happy and rolls with the punches, never really complaining about anything. It's amazing, no...he is amazing!

I want to thank everyone for your kind support of Jaxson over the past year. He has been making great progress and I would like to take a moment here and brag like a proud grandma. Jaxson won his first swim event!! I say first because he is like a fish in the water and we want to encourage that with additional swim lessons and swim therapy. Ok, back to his big win-he raced against other children his age (none with disabilities), he had an aid that helped to turn him over so that he could take a few breaths, other than that he beat them all by a mile-well, maybe just a few feet!!! Tears of joy ran down my face the first time I saw the video. I was away when he raced but luckily my daughter video taped it.

Jaxson's progress has been a long, slow, drawn out process but it has been progress and every bit of it has been worth the two surgeries. His muscles are developing and he has had a huge growth spurt. This year he started mainstream first grade and has a few of his friends from kindergarten in his class. He enjoys school and is happy every day that he gets off the bus. Jaxson is doing great in math and he is using a tablet (instead of writing as it is laborious for him to write) so that he can keep up with the other kids. My daughter hired a tutor for extra help to make sure he is keeping up.

Right now Jaxson uses his walker and can walk about 2000 steps at a time, however at school he uses a wheelchair. I am against the use of the wheelchair but the school feels that he takes too much time getting from one class to another. I don't want him lagging behind so I guess it is ok, not great, but ok. My main concern is once in a wheelchair always in a wheelchair... If I sound more like his mother than grandmother it is only because I love him so dearly but I am 100% his grandmother as his mother and father set the boundaries and have to be tough on him -it's my job to spoil him and I intend to do so! During all of this we (when I say we, I mean my daughter, her husband and I) are never once forgetting Tanner (his younger brother), he gets loads of attention and is about the cutest thing in the world. He just learned to swim and is fully potty trained and very proud of it!

We have been researching Stem Cell Therapy and its benefits for children with CP. My daughter made a conference call with a Dr. in California to set up Jaxson's first Stem Cell Therapy. My fingers are crossed, she has been following a young girl that presents like Jaxson and she has done extremely well with the therapies; each time improving just a bit. I'll be in Kenya during the conference call but I am hopeful that she can schedule the first treatment when I am home so that I can be there. Fingers crossed!

Through this all, my family feels truly blessed. During Jaxson's hospital stays we have seen many children that have a lot less hope than Jaxson. And believe me, we count our lucky stars daily. One of the things that we can't help but worry about is Jaxson gaining acceptance from his classmates. The thought of someone making fun of him for the challenges he faces breaks my heart. Please if you have children and have not already spoken to them--make them aware that everyone is different and everyone is good at something.

Thanks and hugs, denise

As some of you may remember my daughter and I took Jaxson to St. Louis to see his surgeon, Dr. Park this August (2018)

We got some great news, the doctor said that Jaxson could and should start walking with his canes and he feels that the AFO’s (leg braces) that Jaxson has been wearing for as long as we can remember can come off! Tears of joy mixed with a hint of concern rolled down our faces as we watched Jaxson’s face light up like a Christmas tree when he understood what Dr. Park was saying. No more braces! For Jaxson and any other 7 year old that was huge, as I am sure they have always been uncomfortable and they have made him feel different from the other children.

With that great news came some hard core truths. Dr. Park said that studies have shown that children that can’t transition out of their “walkers” by the time they are 10 years old will most likely spend the rest of their life in a wheelchair. He said he needs to start walking on his own with his arm canes, NOW.

Wow, I can’t tell you how sick my stomach was at that moment when we were hit with that reality. Before we left to come to St. Louis I had been working with Jaxson trying to get him to walk with his canes. It was next to impossible, as he could not stand up independently at all, let alone walk with them. He needed me to move both his legs and arms.

One of the reasons we went to St. Louis was because we signed Jaxson up for a series of intense therapy sessions with the physical therapists that work closely with Dr. Park. They worked with Jaxson daily and gave us lots of pointers on how we can help Jaxson moving forward. By the time we left the hospital Jaxson was making great progress. He walked long distances with his canes with assistance but not like before-he was on a mission to keep those braces off his feet.

Jaxson was not the only one that found inspiration, strength and renewed energy to work harder than ever; my daughter, son-in-law, and I were also committed to keeping Jaxson out of that wheelchair. Our entire family has rallied together to make sure that Jaxson has plenty of time working with his canes. We are also in the process of finding him a personal therapist that will help him 3 times a week. Jaxson used to go to therapy sessions at a center but we now realize that they are not equipped to help Jaxson with his journey. And it is his journey, he has to do most of this but at least we are now informed and our family will do whatever we to can to support and help him no matter what the future holds. But once again we have hope….

Denise

9/01/2019

Jaxson with family in tow, just returned home from a week long intensive therapy in Houston Texas. This week long therapy session has been designed by Mike Poole from Walk This Way, USA. It is a specialized strength and conditioning program targeted to children with Cerebral Palsy.

Jaxson did very well at the therapy sessions and we got a lot of good ideas to go home with. We are in the process of transforming my daughter’s basement into a home gym for Jaxson. He wants to call it Jaxson’s Jungle and start a YouTube page so that he can teach other kids what he has learned. I think if it keeps him motivated-then it will be a good thing. That seems to be the hardest thing— keeping him motivated. Jaxson just wants to be a normal kid with lots of free time to play but all of his time is accounted for. It’s a hard balance to keep. But my daughter and her husband do a great job keeping “the normal” in Jaxson’s life.

Jaxson works hard with his canes and we struggle to make sure he gets enough time daily to work with his canes. He needs to be out of his walker by the age of 10 (according to Dr. Park) and Jaxson is now 8 1/2, so time is running out. His biggest issue is his core. He does so many strengthening exercises and believe me this kid is ripped but his core is still so weak. His body cannot control his movements.

Jaxson will start 3rd grade in a few days and he is really excited to meet new friends and to see his old friends that he has missed over the summer. He attended day camp with his younger brother Tanner (Tanner will start Kindergarten at the same school) and some of their buddies. He did well and enjoyed his time there. The camp staff was very nice and helpful. Their motto-BE KIND, I love it!

Denise

9/15/2019

Jaxson started a new program called Brick Stars Challenger Hockey, their mission: The Brick Stars strongly portray the vision that developmentally challenged athletes can learn to play the fundamental game of "Special Hockey" and the initiative exits that, "Hockey is for Everyone."

Jaxson’s friend Landon attends the program every week just to help Jaxson. He does this after a 1 and 1/2 hour session for his regular program. They take turns pushing each other on a chair. Jaxson’s coach Kerry is a physical therapist. He enjoys his time on the ice but I think even more—he likes to be included and be part of a sport.

September 17th, 2020

Today, my family and I will drive to Florida so that we can take my grandson Jaxson in for his third surgery. He will be having his Achilles tendon lengthened by Dr. Dobbs ( Achilles tendon lengthening is a surgical procedure that aims to stretch the Achilles tendon to allow a person to walk flat-footed without a bend in the knee). Dr. Dobbs works with Dr. Park in Saint Louis but he recently opened an office in Florida. St. Louis is a difficult location for us as a family, so we are hoping this trip to Florida will be a bit easier. Friends have offered their condo and we will spend two days before the surgery having some family fun at Disney. We are hoping that this will help Jaxson’s mental state as he may be leaving the hospital in casts and he has never had leg casts before-ugh…

This past summer Jaxson and his brother Tanner attended summer camp again and they loved it, especially Jaxson. He has bonded with a few of the counselors and on his last day of camp he cried. This year, extra precautions were in place for Covid. Testing, social distancing and masks were hard for the kids but the rewards outweighed the inconveniences. Patrick, who is one of Jaxson’s counselors at camp wrote an essay about his time with Jaxson and it touched our hearts. The friendship, compassion, empathy and care that this young man has shown Jaxson is beyond words. I have included his essay below:

Patrick’s Essay:

Everyday as human beings we are presented with a different challenge, with a different circumstance, etc. On any day at any moment, we never know who or what can walk into our lives and change it forever, whether it be your soulmate, your best friend, or whoever it may be. For me, that person was Jaxson. When I first applied to Pine Grove, it was simply just because I needed a job for the summer and the hours were great! It is safe to say I was not quite “bought in” to what Pine Grove is all about at the time, which is being a role model and a selfless human being. No orientation or staff meeting could have truly changed that about myself at the time. When I first met Jaxson, I had no idea that he would not only change my approach towards Pine Grove, but also my approach to everything that I do in life itself. As it was both of our first years in camp last year, we were both shy facing a new situation with new campers and staff members that we had never met before. I was not quite sure how to go about making sure Jaxson had an amazing camp experience, but the day July 9th 2019 is when everything had changed. As we sat in the theater waiting for dismissal that sunny Tuesday afternoon, I can perfectly recall Jaxson grabbing my arm with the most ecstatic look on his face as he shouted “Patrick, today was the best day I’ve ever had!” From that moment forward, I was completely bought into the experience of being a counselor at Pine Grove. To have anyone tell you that YOU were part of the best day of their life is a feeling so rewarding it nearly brought me to tears. As the rest of the summer went on, Jaxson and I had gotten closer and closer, but unfortunately our time had run out together as camp was over. Although I did not think I would have Jaxson as a camper ever again, he inspired me to come back to camp the following summer and hopefully provide the same positive impact on someone’s life, no matter how hard it was to say goodbye to Jaxson as my camper. Receiving the opportunity to work with Jaxson again this year is the best thing that has happened to me in my life at this point. Not only have we become much closer at camp everyday this summer, but I have also become happier and accepting with myself as a person. Jaxson has taught me that success is not always about being in first place in Gaga, or being the fastest swimmer, but it’s about your own personal success and how YOU feel about yourself when it’s all said and done. Looking around at what everyone is doing should never affect what you do for yourself and for others. Although Pine Grove constantly emphasizes how important it is to make sure our campers are achieving their goals and succeeding at camp, I never realized how that can grow and change a counselor or any staff member for that matter. So, moving forward, Jaxson has not only become one of the most important people in my life but he also taught me more than anyone else has, and that is something I will carry with me for the rest of my life.

***

Jaxson’s spirits are high as he is focused mainly on the fun portion of the trip. I hope that everything works out and he will move forward with his incredible progress. BTW-This year he started school on his canes and left his walker home. That is a huge accomplishment that he could not have been able to do without thousands of hours of hard work and effort. I am so proud of this child who is growing up to be a considerate, kind, young man with a future that is as bright as the stars.

10/23/2021

Jaxson is in 5th grade now and even though he started the school year with his canes, he has been forced to use both his walker and his wheelchair, in order to keep up with the others. He simply cannot walk fast enough in his canes to get from class to class. It breaks my heart as I really wanted, with every fiber of my being, for him to be able to walk independently with his canes. The harsh reality is, he can’t go very far alone. He has worked hard and has given it his all. In life we have to accept the things we cannot change. I think the the serenity saying goes something like this” Grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference”. This has been more difficult than I could have ever imagined. I want so much for him…much more than I could ever want for myself. I’m working on it.

A huge highlight for Jaxson is that he absolutely loves football, wrestling and now soccer. His favorite team is the NY Giants. His bedroom reflects that, and is adorned in all kinds of Giants memorabilia. He watches football games at home with his dad and grandfather that her refers to as “pop.” This is something that they can share together. The first football game he attended in person was at Giants stadium and he was beyond excited. He has to wear a headset so that the loud noises don’t bother him, but he loved every single minute. Folks in our community have been very generous and have given up their seats in order to send Jaxson to another game. Kindness comes in so many ways and so unexpectedly. It makes my family feel loved and part of a community. I am quite thankful for that.

June 1, 2022.

Jaxson fell on the street near his house while with his dad and brother. He was in his walker and did some real damage. I feel so bad for his dad as he feels terrible that this happened just inches away from his reach. But accidents happen and we are thankful he did not split his head open. When Jaxson falls he does not put his hands out in front of him to break his fall-he goes down like a tower and it could easily of been on his head.

Two front chipped teeth, liquid stitches on the chin, black eye, scraped up face and hands, and a possible fracture to his growth plate on his shoulder. The pot holes on my street finally took him  out. It was only a matter of time and not the first time he has hit a giant hole in our street in a different spot. When I asked the town when they would be paving our road I was told it would be years before that happens….pathetic to say the least. Seeing the orthopedic tomorrow for an MRI and dentist later today to make sure there isn’t any root and nerve damage.  

Update- Jaxson has a broken shoulder in addition to all of his other injuries. He goes back to the specialist on June 1st, fingers crossed he won’t need to be casted. He now has two capped front teeth. Ugh….

December 2022-

Looking forward to Jaxson’s birthday in a few days. I can’t believe he will be 12 years old and his brother Tanner will be 9. Time sure does fly by! Jaxson now has a front cap and a repaired front tooth. His teeth “look” back to normal but he can’t bite down on a bagel using his two front teeth because he already had the repair done again. It’s not the worst thing that can happen to a kid growing up. His doctor said his shoulder healed nicely but he will need to have it checked bi-yearly. His spirits remain good and he is well liked in school by his teachers and peers. He continues to have an aid at school to help him with getting to class, bathroom, writing, etc.… He mainly uses a laptop for his homework, as his writing skills are not good—that’s part of the CP, he still has some spasticity in his hands. Jaxson is small for his age, he was born premature so that is not uncommon for preemies.

Jaxson has become a total football & soccer fan with football being his main love. He shares this interest with his dad but mostly his “Pop” (my ex-husband). They adore each other and have so much in common with the games, players and teams. I didn’t realize I knew so little about football until I tried to watch a game with them LOL! I’m so glad that they share this passion and ‘Pop” lives right next door so Jaxson can go over to his house anytime he wants. It’s a good thing <smile>.

In addition to Jaxson’s birthday, Christmas is right around the corner. He is getting a gaming computer so that he can play all the video games he loves so much on a big screen. Our family is grateful for all of the help that has been given over the years by friends, community and family. Everyone loves Jaxson and we are so blessed to have him in our lives.

I was thrilled to learn that Jaxson had made the high honor roll this marking period! So proud of this young man. And again, he made the high honor roll!! Woohoo!! So very proud of his accomplishments.

April 12th, 2023.

Jaxson had his yearly check up with Dr. Dobbs, his surgeon in Florida that preformed his last surgery. Dr. Dobbs feels that Jaxson’s one foot (left) is beginning to club. He is practically dragging it around. So he will need another surgery, casting for 4 weeks, then an additional casting for 2 weeks followed by night braces, and everyday braces that will be custom fit for him. After hearing all of this and the many visits back and forth to Florida, we are going to try the braces first —along with more intense physical therapy to try to correct the clubbing on our own. If after a few months there is no improvement then we will have to go for a November surgery schedule. UGH! This poor kid cannot catch a break. Honestly, I think it sucks that he gets the short end of every stick. Ok, rant over….

April 21, 2023

The thought of another surgery has Jaxson working harder than ever. He has shown some real improvement with his steps. Every night for 20 minutes he walks with his canes around his front yard—assisted by dad. The terrain is not completely smooth, but he is working diligently to control his steps. He has to concentrate on every move and he is doing it! I guess the thought of another surgery is the fire he needed. He has not been fitted for his braces yet, but soon. He continues with his other physical therapy sessions both in school and after school. Time will tell.

Tanner continues to excel at just about everything he does. I guess that can be frustrating for Jaxson, but he does understand that it isn’t Tanner’s fault. Tanner is on the soccer team and is doing fantastic. Jaxson cheers him on at his games and sometimes…he points out what he could have done better. It must be hard to sit on the sidelines all the time. I think Tanner must realize this, because he almost never complains when Jaxson speaks out. Tanner is also on the baseball team. He had to try out to make the team and he loves it. His grades are very good and he continues to be a kind kid. He is so helpful to his brother. I love this little squirt— but he is getting big too!

May 4, 2023

Jaxson had a great day today, when he got off the school bus he was beaming from ear to ear. He had been elected “Student of the Month”. Apparently, this is something that everyone votes on. He was so proud and rightfully so. I am also so proud. Chocolate cookies to celebrate!

July 10, 2023

Jaxson has been having a great summer. He is back at camp and says he loves it! He has a private swim instructor that has worked hard with Jaxson to develop his kicking and arm strokes in the pool. They also practice pool drills-where he is tossed into the pool (instructor and dad nearby <smile> ) and he has to get to the surface, swim to the side or roll over and float on his back. So far he is able to this very well and it brings tears to my eyes each time he swims or rolls over to a floating position. Plus, he absolutely loves his swim instructor.

His family along with a few other families are going on a camping (glamping) trip and Jaxson is bringing his best friend Koa. They are going to have so much fun. I can’t wait to see if he enjoys camping. It will be his first time.

His brother Tanner is doing well too. He continues to earn awards for his kindness and leadership abilities. I am so proud of both boys.

October, 11, 2023

School pictures came out and this is Jaxson in 7th grade, sporting his Ray Ban glasses and summer tan! ! Time flies!! It’s not a good quality image as it was a cell phone copy of his photo that was uploaded to Facebook , and then I downloaded it from Facebook, ugh….

June 30, 2024

Jaxson has completed 7th grade and did very well. He made the high honor roll for most of the year with one class holding him back from an entire year of high honor roll. His teacher gave him a B and said it was because his notes were not organized enough. That’s extremely upsetting to me since Jaxson can’t write his own notes and has to rely on his aid for the note taking. Perhaps the aid deserves the B and not Jaxson. But, if that is the worst bit of nit picking he will experience form teachers than I can live with it. I still feel the teacher should be made more aware of his comments and how ridiculous they were/ are. Rant over!

Jaxson continues with his swim lessons and if you saw him in the pool you may not know he has CP. He can swim across the pool in a continuous, uniform pattern. His breathing is good, he has so much energy, and his arm coordination looks great. He does need to lift his core more but he does continue to improve. He is now treading water and can get himself safely to the side of the pool if he is thrown in (he never is —unless it is for his safety session).

It is important to note or rather reiterate that Jaxson has a mild case of CP. Our family is very thankful for that as we so many children affected in so many ways from CP. I can’t tell you how many times I think about how lucky and blessed we are. I am also very thankful that his speech has not been affected. We are able to enjoy lots and lots of conversations and I treasure each and every one.

Jaxson has a best friend that continues to support him, his name is Koa. Koa is a great kid and will someday rule the tech world. As a 7th grader he now works for a gaming company. Along with Koa he has several other friends in his friend group. One of which lives close by and drops over from time to time to hang out. I can’t tell you how happy that makes us all. Jaxson is truly an amazing kid!

I know this is Jaxson’s Journey page but I want to catch you up on Tanner (Jax”s brother). Tanner is a gifted athlete. He is popular in school and is the kindest kid I ever met; helpful and smart, a true leader.